Life, Autism, Disability, and More

Simon-Appropriate Chores

25409223 Dishwasher after cleaning processSo there’s been a lot of chatter online about having your kids do chores – “age appropriate chore” charts are popping up all over. At 8, your child can…and at 10, your child can… Except that isn’t always true. Age appropriate isn’t always appropriate. Instead, it really needs to be child appropriate.

In our case, it’s Simon-appropriate.

Yes, Simon has chores. He may only be three or four mentally, but even at three or four, kids can do a whole lot of stuff, especially if you ask them to. He can carry the laundry from the dryer into the bedroom to be folded (although he isn’t good at folding it…yet). He can put his laundry away. He can let the dog back in when she’s in the backyard. He can put his dishes in the sink. He can get out silverware and plates, with some direction.

And recently, we’ve added two new chores to the list. They are animal related. First, he now has to bring the dog’s food dish to the laundry room so that she can get food. Second, he has to refill the animals’ water dish, although we give him the water in a cup so he can just pour it in.

When we started with the water, I was a bit nervous. I wanted him to do it – I prefer to try to push him instead of just keep things at a status quo – but I could just see the water hitting the ground and making the kitchen a slippery mess pretty easily. But imagining it doesn’t make it so any more than not imagining it keeps it from happening. So I filled up the cup, showed him how to kneel down and pour the water, and then stood back and let it go.

He did great. He filled up the water dish, and now if I spot that the bowl had gotten empty, or close to empty, I can fill up the dish and call him over. He comes over, generally happy about it, and fills it up.

Honestly, I think he enjoys having chores to do. For the most part, we let him do his own thing. He watches tv, plays with toys, colors, draws, and does whatever he wants to do. He only ever really gets cranky and tries to refuse when we tell him to put his laundry away, but if we tell him that he has to do it, he may stamp his foot or make noise, but he does it. When it comes to the pets, though, he really likes them, and I think that he likes taking care of them. He pets the cats and the dog, calls them by name, and even named the newest addition (Sammy).

I don’t know if any of this is a sign of how he’ll do when he’s older and ready to transition to the “real world,” but it does make me feel better to see that he can learn to do simple tasks. Who knows? Maybe he’ll wind up cleaning up at a kennel or helping out at a vet’s office. We’ll just have to wait and see…and give him more Simon-appropriate chores to do.

Why can’t we face the truth? Some people are assholes…

assholeOn the 15th of January, the Daily Mail (which admittedly doesn’t have the highest journalistic standards) published a lovely little piece by a woman name Carol Sarler with the lovely little title “Why can’t we face the truth? Having an autistic child wrecks your life…

Let me just start by saying…wow. Seriously. A big wow.

This piece is written by a woman who *does not* have an autistic child. Nope. She has a friend who has one, though, so, like anyone who has stayed at a Holiday Inn Express, she’s an expert.

She says that “brave and devoted mothers…have clung to the positives brought into their lives by their children” because when one child with autism is born, then “three generations of lives – I include his own – [are] wrecked, for ever, by his cussed condition.” Yep. Thanks for telling me, dear sweet Carol, that my life is now “wrecked.” It’s good to know that I’m “brave and devoted.”

That’s not enough for her, though. She points out that the parents can’t lead a “normal” life – “how many shops – or, indeed, how many customers – are going to tolerate a child who screams, bites, defecates and destroys everything within reach?”

Ah, I love people like this. The assholes. The ones who believe that anyone with any abnormalities should be locked up, hidden away. Let’s not modify ourselves and help those who are in need. Instead, we should force them to leave the public life and hide themselves away. A Kennedy at heart, perhaps?

Carol’s point is that she believes in eugenics. “…As the debate rages over the possibility of a prenatal test for autism, with abortion then optional. And, so far, most of the argument leans towards such a test being undesirable and unethical.” She even goes on and states that she never asked her friend for her opinion because “…it is hard for a mother retrospectively to wish away a living child who, come what may, she loves. But looking on, as a relatively dispassionate observer; looking at the damage done, the absence of hope and the anguish of the poor child himself, do I think that everyone concerned would have been better off if Tom’s had been a life unlived? Unequivocally, yes.”

To her, it seems to a simple equation: she doesn’t want her life to be “ruined” by her friend having a seven-year-old autistic son. And while she claims that their lives are ruined, we never hear from them and we never see their point of view. It’s her points. Her opinions. Her being a total fucking asshole.

Not sorry for the language. It needed to be said.

When people like Carol can go around making statements like this, we’re mere steps away from letting people with disabilities be sterilized or put in camps or killed. Why stop by letting them be removed from the womb before they’re born?

I’d like to ask her how she feels about testing people for other diseases. If we know a child is going to have cancer, should we abort it? Because, you know, why let the parents get attached if the kid is just going to die later? And what about physical abnormalities. Those make people’s lives harder, too. Why should parents be forced to use wheelchairs for their children? Hmmm? Perhaps we should develop a test to help us determine who is most at risk for Alzheimer’s and dementia. Because, you know, those people are also a burden on their families and society as well. Why let them live?

Oh, wait, because we’re not a barbaric society who kills what it doesn’t understand. We don’t destroy for the sake of our own ease. We learn to accept and work with what we’re given in life. We love our fellow men and women. We support those who need support and spend our lives in the service of others, not constantly worrying about ourselves. At least, that’s in an ideal world, right? The kind she wants to create through hatred and fear, not love and compassion.

 

 

 

Spread the word to end the word…in group therapy?

Respect-BannerDon’t get me wrong, I know that I’m going to find insensitive people just about everywhere. But I didn’t expect to find them in out-patient therapy. (If you want to know why I’m currently in out-patient therapy, you can check out my other blog about my mental issues…)

Anyway, so the other day in therapy, while she was talking, one of the other women – let’s call her Zelda – said that her brother was Autistic, and he was around her age. She’s about 60, ready to retire, and he’s living at home with their parents still. She pointed out that, at the time, they didn’t have much they could do to help him, but she felt like it was better now. She commented that he was the family’s project. I thought about talking to her then, but I decided against it.

So the topic was put to bed, and no one else talked about it…until…

Something came up, and she asked me, before therapy started, about whether or not I had any children. Of course, I said, yes, I have a son, he’s 13, and he’s Autistic. Zelda asked a few questions, and when I explained that he was fairly moderate to severe on the spectrum, she said, “Oh, that’s bad.”

“No, it’s not,” I corrected her. “It’s not bad at all. It’s just what he is.”

She back-pedaled. She didn’t mean it *that* way, you know. She was only trying to say that she knew it was hard. Okay, I’ll take that. It’s hard on him. It’s hard on us. It’s hard on his teachers. It is hard. But it’s not bad.

Which might be why I was already in the fight-or-flight mode when another woman, let’s call her Aileen, said that she was there because of anxiety and her family. Her family drove her crazy, she said. They wouldn’t leave her alone. Even when she tried to take a walk by herself, they wanted to come with her.

“It’s so retarded.”

Yup. She said that. About the fact that her family wanted to be around her all the time.

Now, don’t get me wrong – I’m not saying that they’re stupid for wanting to be around her all the time. But I do think she’s pretty uninformed to use the r-word in a psych setting.

But no one said anything. Not even the therapist leading the session.

Because I’m not one to shy away from confrontation when it’s appropriate, I went ahead and raised my hand.

“Hey,” I said, “I’m sure you didn’t mean it this way, but, see, I’m part of this movement. Spread the word to end the word.  The word is retarded. I know you just said it, but that’s kind of the problem. It’s pretty insulting to use it as an insult. My son has intellectual disabilities, and so I’m kind of sensitive to hearing it…”

I know I said more than that, and she looked a bit surprised.

I brought up the need to be respectful of all people, and I pointed out how if she was had said something that insulted another group of people, I still would have brought it up because it is disrespectful to insult anyone, especially if they’re not there to defend themselves.

She was cool with it. She apologized, said she hadn’t meant it that way, and said that she normally tries to be careful because she had a cousin with…and she stumbled over it (because I guessed she hadn’t heard it before)…intellectual disabilities.

And then the therapist got involved and made sure that she was okay with me calling her out and asked if I often did that, and I said that, yes, yes, I did. All the time. Because it was important to realize that insulting people because of their disabilities was not okay, and like none of us would like it if we were turned into negative slang, we shouldn’t do it to other people.

I hadn’t expected to have to defend myself, or my correction of someone who used a word as an insult, but there you go. You never know when – or if – you’re going to have to speak up. So don’t be shy. If someone says it, tell them.

Spread the word to end the word.

Open carry and Autism

open carry

Open carry at the store this morning

I’m not here to argue Second Amendment rights. Please don’t even bother responding if that’s what you want to talk about.

What I want to have a conversation about is a problem that seems to have been missed by so many people when they consider the option of open carry.

But first, let me tell you a story about something that happened many years ago.

We were at a park up in Houston. There was another mother there – one that I realized quickly also had an Autistic child. Her child, though, was probably about 15, and he might have had other issues besides just Autism.

Simon was young enough that he was still in diapers throughout the day, and when we got to the park, I had done a quick diaper change because he was too wet to get through the afternoon, and the bathrooms were far away. I had folded up the diaper and put it in a bag, but the teenager spotted it and knew what it was. He lunged for it before his mom could stop him, and he tried to grab it. He had an issue, one that I’ve heard of more since then, in that he would try to eat diapers.

The other mother got aggravated and asked me to throw it away quickly as she tried to control her son.

At the time, my only thoughts were about how hard it was to be her, to try to wrestle with a boy that was bigger than her, and how I wished that Simon would turn out to be more functional and without any weird eating habits. It was, to me, a moment of concern.

Now, though, the story in my mind has a different point.

What if that teenager liked toy guns – or any guns – and didn’t understand that he shouldn’t touch them if they were other people’s?

Plenty of kids and teenagers without disabilities might have a problem keeping their hands to themselves, but they can be taught and understand things.

Some kids on the spectrum – or with other disabilities – may not reach that point. Having someone walk around with a gun on their hip, a gun that they may feel the need to reach for if someone else goes for it…well, it worries me. I know that if Simon reaches for one, it’s because he doesn’t know what it is, and he doesn’t know what it will do. But all it takes is for someone with a quick trigger finger to feel threatened, and we’re in a shooting situation.

So, please, if you open carry, realize that there are kids and teens and adults out there with disabilities. They aren’t threatening you if they reach towards you. And if you feel that they are, well, that’s a problem I can’t help you with.

Merry New Year!

calendarYes, I’m a big fan of “Trading Places.” The 1983 movie, that is, not the show that’s on HGTV or whatever. It’s an excellent holiday and end of the year movie. Even if it’s completely inappropriate at times. Although perhaps that’s what makes it so excellent.

Regardless, that’s not the point of this post.

The point is that this afternoon, I was sitting around, working on my computer, and Simon walked up to me.

“January first,” he said.

“Umm, okay.” I wasn’t entirely sure how he knew what day it was. I mean, yes, we had changed the calendars around the house, but did that mean he knew how to follow them? He does “calendar time” at school, but that seemed to be less about figuring out the day on the calendar and more about reviewing the day of the week, the weather, and all that good stuff.

“January,” he insisted.

“Yes, it is,” I told him. “It’s the first of January.”

He stood there, looking at me.

“What about it?” I asked. “Why does it matter?”

“Exciting,” he said.

Exciting?

How is January first exciting? He couldn’t really tell me. But it was exciting for him.

And it was exciting for me.

Simon came to me to share something. Maybe he couldn’t explain it, not in words. Maybe he wasn’t sure why he felt that way, and maybe he wasn’t even sure how he was feeling. But he was trying to tell me. He wanted me in on it.

January first was very exciting.

On Saturday, Simon got Sixth Place

bowlin1Sixth place out of six, that is. Because sixth place is still worth something.

Don’t get me wrong. I grew up in a world without everyone getting a trophy. You had winners. You had losers. I played basketball (very poorly), and if I was lucky, they would let me in for the last minute or two of the game, when my playing couldn’t affect the final score. I was one of the official bench warmers. And I was okay with that because I knew I wasn’t good at it. But I tried. I didn’t expect a reward for trying. I would skip the award dinners because, well, I wasn’t getting an award, and the dinners weren’t really that great.

But that’s not the same for Simon.

Simon is in Special Olympics. This past Saturday was his bowling tournament.

bowling2In Special Oympics, everyone is included. Everyone plays.

Some of the kids there can’t handle crowds. Some can’t handle waiting. Some can’t handle noise. Some can’t handle sitting still. Some can’t walk. Some can’t speak.

And that’s all okay.

Because it’s Special Olympics.

The pledge they recite before the games begin is always the same:
“Let me Win. But if I Cannot Win, Let Me Be Brave in the Attempt.”

They are all brave.

They push past what makes it hard for them. Some of them wear special noise-cancelling headphones. Some of them roll up in their wheelchairs and push the ball down a ramp. Some of them need to have a coach or assistant down in the bowling area with them. But they do it. And they’re proud of doing it. And they have fun doing it. They have fun being involved. They have fun competing. They have fun knowing that they are being like every other kid out there – win or lose, they are playing.

So Simon got sixth place out of six. And he stood there, tall and proud, while they put the ribbon around his neck. And we stood there, tall and proud and taking pictures, knowing that he made it through another tournament, through all the things that normally would bother him, and through two hour of focus.

As a parent, I have to tell you…some parents can’t be dealt with

12371944 Ally Friend Computer Mean Partnership And Help

I got two different emails in the same week, and it made me sad to read them together. One was a link to an article titled “Tips for Teachers: How To Deal with Upset Parents.” The other email was from a group I belong to, a parent support group. While it sometimes is a good place to exchange information, but sometimes…not so much.

Now, first off, let me say that I will not name any names, and the person who wrote this legitimately believes it, and, as such, I don’t want to mock her or make fun or her in any way. Instead, I want to sympathize with her, and I wonder what it took to make her believe this.

Here’s a quick quote from the post:
“They [the school districts] think we should be grateful they even allow SE kids in school and parents should just be happy for a ‘break.’
“Advocacy of SE kids can be draining.  You win one battle and they will hate you.  You think if you win one battle the school will change, but they never will until some powerful force forces them to do so.  I’d put the Office of Civil rights on speed dial. Don’t look to the state education board to be in your corner. The first thing they do is ask you what district you are talking about, and then they give the district a heads up.
“Each year, they have teachers and several school personnel go to a seminar put on by district lawyers who teach them how to get around the law.”

Now, I can understand her feelings, to some extent. Many years ago, we had a problem with my son’s school district. And we found out, after the “fight,” that the whole reason it was even a fight at all was because of one person – one person who was probably too scared to admit that she had made a mistake. People below her were willing to work with us. She, however, seemed unable to let them because it would undermine her perceived authority. It was a bad experience, and if we had continued to have bad experiences like that, we probably would feel like the person who posted the above message.

But…I have to say, I don’t believe that school districts are bad and evil. I don’t believe that schools seriously send their teachers to a session to learn “how to get around the law.”

What I believe is that there are bad people everywhere. You can have a bad director of special education. You can have a bad teacher. You can have a bad lawyer. You can have a bad police officer. You can have a bad barista. (Sorry, coffee is an important part of almost every SE parent’s life, amIright?)

As someone who “won a battle” against a district, I have to say that I have not felt hated. I have not felt like the school refuses to change. I have not felt like I need to constantly be in touch with the Office of Civil Rights. Maybe it’s because I’m lucky. But I don’t think that’s it. I think there’s something else there.

I think most people who are in special education are there because they care. Because they want to make a difference. They share things like the article written by Dave Wilson where he advises teachers to reflect on what parents say and what they mean, be open to ideas, ask for help, and communicate the positives. Does that sound like something that would be out there if these teachers and other professionals didn’t care? If they really went to training to learn how to avoid the law, why would they care about connecting with parents?

If you, as a parent, honestly feel that the school, the teachers, the district, even the state education agency is out to get you, you may need to stop. You may need to read that article and see if you can apply it to yourself. Do you need to learn how to deal with the school and its reps? Are you actually the problem?

 


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